Monday, November 10, 2008

Alzheimer’s Disease – A Duty and A Toll

[Editor’s note: A little more than a year ago, on October 16, 2007, I posted about my family’s journey down a road all too familiar to many other families: the road called Alzheimer’s Disease. In that post, I discussed recent developments in a blood test that could predict the probability of developing Alzheimer’s Disease. I challenged readers with this question: would you take such a test, even if you had already traveled through what I call “the long goodbye” with a loved one? Would you want to know your chances of having to walk that same path? Below is that post in its entirety.]

I heard the news yesterday that a new blood test was being developed at Stanford University in California that could help detect the probability of developing Alzheimer's Disease within two to six years. While the results are still preliminary and the next step is to open up the testing to a larger test population, it has had a 91% accuracy so far.

Some of you know that my mother, Jacqueline Austin MacEntee, was diagnosed with dementia, one of the early indicators of Alzheimer's disease in 2000 at the age of 58. I can relate to you what I and my family had to endure just to get Mom diagnosed.

The diagnosis currently starts with a visit to a doctor for basic tests (blood, liver, cholesterol, heart, etc.) and then being sent to a specialist for neurological testing such as an MRI. Once everything is cleared as to possible causes, comes a visit to a gerontologist and a test consisting of about 30 questions. Questions are basic (the current day or year, the current president, etc.) and some are more complex (reading a small story and then relating what the story was about or who the main character was). This is usually when the diagnosis is positive as to Alzheimer's Disease.

And so it begins. You know it eventually has to end, and how it ends, but it just seems like it never ends.

You notice a marked change in behavior and instances where Mom just isn't herself. Many times you call and ask her what she did over the weekend or what movie she saw and she can't remember. Then it becomes the lack of remembering simple things like how to drive from point A to point B in a small town where Mom has lived for over 40 years. But you also rejoice when your mother utters her disgust about Bush and the other's in his administration who've hijacked our democracy. Part of you says "it's just the Alzheimer's" while part of you says it is clarity and another part of you hopes that all the years of discussing your own views have influenced her.

The disease progresses to affect employment and the means of earning a living and surviving financially. You deal with the chief at the village police office where she works as a dispatcher and clerk when he tells her that she has "psychological problems." She loses the second job at a local restaurant because she can no longer handle the bookkeeping responsibilities. You step in to get Mom out on early retirement via Social Security and still you need to fight, hire an attorney, and attend hearings, meetings, etc. But you feel good that you are able to get Mom out on retirement early so that she can enjoy the few good years she has left going to movies, shopping, etc.

And the denial, the denial, the denial -- from both Mom, me and the rest of the family -- that this is really happening. Much of the denial is the realization that by watching Mom and the deterioration of her condition, you could be looking in a mirror held up to your face so that you know your own mortality. Even worse, that you come to the realization that this could be you. "There but for the grace of God . ."

You drag your partner into the mess, the person you want to spend the rest of your life with, the person who may very well be doing all this for you one day. But you know that he'd gladly make the sacrifices just as you would for him or for his parents.

Then there are the financial scammers that come out of the woodwork. Her "financial advisor" at New York Life who talked her into an annuity that only made money for the advisor. And then the same advisor selling Mom expensive health books and vitamins as a treatment for the disease. I know - I cleaned out the house, saw the books, and have the receipts.

And as the months progress into years, the gerontologist's test is given at least yearly and the number of correct answers dwindles from 22 to 20 to 17.

You decide to take the car away after several instances of U-turns through the grassy median of a 4 lane highway. You notice unexplained dents and dings to the car or even to the house or garage. You have to fight and get a letter from the doctor to give to DMV in order to take the car away.

If you are smart or lucky or both, you find a good elder law attorney and you do this early when Mom can adequately communicate her wishes. Wishes such as "do not resuscitate", funeral and burial, will, assets, care, etc. The power of attorney kicks in and you have so much more responsibility than just making sure Mom is comfortable. But you know you and your family are lucky, and smart, because you did this early. You didn't wait to find out that investments were sucked dry by scammers who sell home improvements or driveway repaving or annuities. Boy were you lucky.

While you sort through the tangled financial web of the past five years, you try to arrange for in-home care for Mom, knowing that having the familiar around her is the best thing. You arrange for adult day care at the local hospital where on a given day she is probably the youngest one there but most definitely the most ambulatory. You bring in local women who specialize in elder care to stay with her the other 16 hours of the day and also to transport her to day care and doctors' appointments. You want to keep her in the home she bought 25 years ago, as a divorced parent with two boys and little credit. You know she deserves this and you and the rest of the family make sacrifices so this will happen.

You decide that while you've enjoyed living in California for the past 20 years, you can't handle all the tasks and responsibilities from so far away. The telephone, e-mail and the internet only work up to a point. You move to Chicago so you are at least a short two hour flight away, with three flights to New York each hour from O'Hare. You feel blessed because your employer in California believes in you and your work and the sacrifices you are making so much that they let you work from home in Chicago since they don't have an office there. You thank Heller Ehrman LLP and all your work family from California to London for being so supportive.

You get so caught up in the politics of family, and the squabbling and the pettiness that you decide to walk away altogether. You decide it isn't that you aren't up to the responsibility but that you don't know why family has to make it all so complicated - especially those who are selfish and want this to be about them and not about Mom. A simple Thanksgiving day phone call turns into a yelling match with your aunt who doesn't know how to handle Mom or why she has been accused of stealing a book or moving furniture. You decide you need a break so you don't call for close to six months and you drop out. And you feel guilty, as you should. And every time you are willing to put it behind you and focus on what Mom needs now because you are back in the mix, someone is there to remind you of how you walked away.

And besides bleeding tears, you bleed money. Your mother's money. The money she worked so hard for at the phone company before she went out on retirement due to a bad back. The money she earned working for the state at the police station. The SSI money. You run credit reports and find out there are over 100 credit cards in her name, many from stores like Macy's (where she had 6 accounts!) with clerks who say "would you like to save 15% today by opening a Macy's account?" knowing that Mom already had other Macy's accounts but the $5 commission was all that mattered. You close all the accounts, cash out IRAs and that damned annuity at a loss. You end up paying federal and state income tax as if Mom earned over $100,000 that year all because you had to cash in the investments for her care. But you also know that this is the best thing to do in this moment because it means months of in-home care, and safety and security. That's why we save for rainy days and right now it is pouring.

And the number of correct answers, at least on that test, becomes 15, then 12, then 10. For the rest of the process there are no correct answers, there are no touchstones because you've never been this way before. Oh how you don't want to be here right now but oh how you do because it's all about Mom.

Besides untangling finances, you have to untangle agreements and understandings that Mom entered into with other family members but had not the mental capacity nor the right to enter into. You deal with the house in Florida and you deal with Mom's home. You deal with the Grahamsville property that Mom inherited from her great-grandmother (Therese McGinnes Austin) for all her years of sacrifice and care. You realize that Mom entered into a purchase agreement with a family member who has since rented the property out but that person can't prove their payments to Mom or for taxes. You know that property meant so much to Mom as a kid but you also know the best thing is to let it go and realize that she was taken advantage of and to just deal with it. You deal, you deal, you deal. Until you think all the cards are dealt.

You fight with other family members who either think they know how to care for an Alzheimer's patient or want to keep denying that their sister has the disease. Because there's a small chance, given that the oldest sister already died from Alzheimer's, that they are next on the list to get it. But you also find other supportive family members who are glad to pitch in and actually make so many sacrifices for your mother when you know they already have their hands full.

Then comes the time to talk to Mom about finding a "facility" for her long-term care when either the finances or patience runs out, or both. You dread the discussion you have to have on Mother's Day, of all days, but you find she takes it well. Then you wonder if she really understands that a facility means a nursing home. You wonder if she is clear enough to figure it out over the next few weeks and retreat back into the denial stage. You have visions of that scene in the Exorcist when the priest puts his mother in an inner city nursing home yelling "Demi, why you do this to me? I'm afraid Demi." But you realize that when you see her a month later that she's lost over 20 lbs, she's eating better, she has lots of activities. She is safe, she is happy, she is living in the moment.

Next you have to clean out the house you grew up in and you don't know where to start. You make six trips in one year, buying boxes when you step off the plane to Newark. Working long hours sorting through every scrap of paper, every wadded up tissue in a sweater or pants pocket because it might contain something of value, every book some of which would have a gold bracelet as a bookmark. You remember that Mom took care of your great-grandmother and your great-aunt (Ethel McCrickert Hannan) in that same house and realize that their possessions are still there. You get angry when you find all the crap and junk she's been sold, be it greeting cards (why are there 100 of the same Thanksgiving card from a Hallmark store? I know I won't ever live to see 100 Thanksgivings), or the wrapping paper that people sell for their kid's school, or the needless health books, vitamins, and other quackery and the expensive overpriced dolls from China which are probably decorated with lead paint. And you hope that however crappy or tacky or useless, these things brought her joy and made her happy, even if for a moment.

You sort, you throw away. You become cold, efficient, without feeling as you decide not to pause and look at a photo album - you just toss it in The Box. You donate clothing to thrift stores, you sell antique items that no one wants and that you can't send home to Chicago. Your aunt has a great idea to donate most of the 100+ dolls to a shelter for battered women and children. And when you are back home, you enjoy The Box and all its photos, diaries, etc. later in the year - it is the beginning of this project and other genealogy projects. You feel lucky to have photos from your ancestors and to begin to know who you are.

You have lots of help from family members that you can never thank enough. You didn't do it alone although you feel lonely and have a deep sense of loss most of the time. You thank your Uncle Jerry for all the help from the beginning - for attending hearings, meetings, taking care of finances, arranging in-home care and the nursing home. All of this was not possible without him and without Nan's support. You thank your Uncle Lem and Aunt Judy for helping clean out the house. You thank your Aunt Joan for providing a year of room and board to Mom despite the aggravation and the problems. You thank Beth for making the trip from Delhi and visiting. You thank all your other relatives who make visits at the nursing home, visits Mom won't remember five minutes later, but visits that you know make her happy despite the visitor being saddened by what they see or wanting to cry. And you thank all her friends, even the ones who no longer keep in touch because it is just too uncomfortable.

You keep in touch with family and friends who call and want an update on Mom. Or you get updates from them when they go for a visit at the nursing home. While you notice the deterioration in her condition on each visit, you hear from relatives that she has an ankle brace due to a fall, or this problem or that problem. And still you know you've done the best thing for Mom.

The time you get to spend with Mom becomes shorter and shorter - not because you don't want to visit, but because her attention span doesn't enable her to focus on any one thing for more than 30 seconds. You call the nurses’ station to talk to her and after a short conversation, you realize she put the phone on the counter and walked away. Not because there was something more interesting, but because she can't focus.

And the list of correct answers to that test are now in the single digits. You know what the future holds and you dread it. You don't want to go through the first time Mom doesn't know who you are, but you know it will happen. You already see the difficulty she has in eating, getting on and off an elevator (she won't get on because she thinks you are getting off to visit her), or getting in and out of a car. You know what the next steps are because just like this article, you've read them in some blog or book or news article or website. You know Mom will suddenly stop talking, stop walking, stop eating, stop breathing.

But you will always know that you are your mother's son. And that she knew that too.

I've decided that I can either be bitter or I can be better. And bitter won't change my mother's condition - just mine. I choose better and the way I can do that is to:

a) talk about my mother's experience with people like writing this article;

b) mention the bad times as well as the good times, the negative as well as the positive but focus more on the positive - the negative is there as a reminder but not something to regret for it can't be changed;

c) not regret the journey of Alzheimer's for me, for Mom and for the others involved - for a journey has lessons;

d) understand that I did and do the most that is possible for my mother's care given the circumstances, finances and that I was lucky to have other family members involved; and

e) honor my mother and the way she raised me by not forgetting her sacrifices and her love, her challenges and her gifts, her mistakes and her accomplishments.

After all this, would I want to take a blood test, or any test, that would help predict whether or not I was to have Alzheimer's Disease? You're damned right I would. Not only would it help progress the research that has already been done, but it would help me prepare for the future. And I could live life and every day as if it were important and my last. I wouldn't make someone else go through that dark twisting tunnel of care unguided and with those feelings of helplessness. Knowledge is power and power, be it the power of health, finances or love, can help you conquer all adversities.

Thomas, the first time I read this, I sobbed. Alzheimer's has hit my paternal grandmother, but since she lives far away, it affects other family members more than myself. It is Schizophrenia in another family member that has adversely and more strongly affected my life. Either way, to watch someone you love become someone unrecognizable is a horrible, tragic series of events. Thank you for sharing your raw, vulnerable story. I hope it gives comfort to others enduring the same thing.

I wouldn't consider taking the test until there is a treatment. My mom had early onset Alzheimer's and my dad had Parkinson's, which included dementia. Quite a few members of my mother's family had Alzheimer's as well - including at least two of her seven sisters. The grief over my mom was excruciating to us all, but it was also my dad's finest hour as he cared patiently and tenderly for her, even after she was moved to a nursing home. Our love and respect for him was a bright spot for all of us. And then we went through the awful progression of my dad's Parkinson's. But, in our circumstances, there was nothing we'd have done differently if we'd known before the symptoms began. In our case, knowing it was coming in the future would have robbed us of the joy of the present. I know it would do the same to me and my children. It is sufficiently heartbreaking to watch Alzheimer's unfold in those who are dearest to you, but the family misunderstanding and upheaval, conflict, and even betrayal by trusted advisers that you experienced must have magnified every sorrow. You've honored your mom, both by your love and persistence in caring for her and by telling her story - and yours.Marty

Thomas, I really believe it took a lot of courage to write this piece. Many of your relatives and friends could probably recognize themselves in this saga- perhaps a little shamefully. It is interesting that you wrote it in the second person ("You"), because it really put me into the story. One can relate and experience NOT ONLY Alzheimers, but also any other serious, and prolonged disease that ultimately ends in death, such as cancer. I believe your experiences with your Mom were really tough, but I also realize that there were a lot of good, positive feelings I could take away from your writing. Yes, by our presence and actions we have influenced many others that we have met along the Path. And we CAN meet the challenges, good or bad, along that same path. May you enjoy all that life has to offer you today, and if there is a tomorrow, enjoy that extra time too. I don't know if "enjoy" is the word I want to use here, but hey, it's in the middle of the night. Bob

My 80 yr. old Mom had a heart attack, went to hospital, then rehabilitation center/nursing home. Staff didn't watch blood thinner medicine levels and she almost died. Back to hospital and different nursing home. Doctor said that the nursing home Staff didn't watch medicine levels and her legs and body started to swell. Also Nursing staff made her exercise even though she said her chest hurt and she had another heart attack and back to hospital. Then another different older nursing home in Santa Monica, CA area.

She now has some dementia. She can keep up with conversation but doesn't remember me calling her every night, what she had for breakfast, if she takes medicine, why she has to wear a monitor so if she falls they know it. Doesn't understand why my sister can't stay with her all day until after dark. She keeps saying she would rather be a homeless person.

This nursing home doesn't have many activities and she spends her day pushing herself up and down the halls. I am in AR and she is in CA. She can't travel and I can't move to CA. My sister visits her every day but my sister is on disability.

Mom is on Medicaid. If the nursing home just would care enough to have acitivities such as singing, painting, even picture books or exercise, it would be so helpful. Very frustrating! Thanks for sharing your story!

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What happens when a “tech guy” with a love for history gets laid off during The Great Recession of 2008? You get Thomas MacEntee, a genealogy professional based in the United States who is also a blogger, educator, author, social media connector, online community builder and more.
Thomas was laid off after a 25-year career in the information technology field, so he started his own genealogy-related business called High Definition Genealogy. He also created an online community of over 3,000 family history bloggers known as GeneaBloggers. His most recent endeavor, Hack Genealogy, is an attempt to “re-purpose today’s technology for tomorrow’s genealogy.”
Thomas describes himself as a lifelong learner with a background in a multitude of topics who has finally figured out what he does best: teach, inspire, instigate, and serve as a curator and go-to-guy for concept nurturing and inspiration.
Thomas is a big believer in success, and that we all succeed when we help each other find success.